The Self-Care Salon is a mostly-monthly discussion, workshop, and community-building event, with each event focusing on a specific aspect of self-care.

The March salon is all about self-care and polyamory. We’re meeting on March 4, from 1:30-3:30, at Loft 112. You can find the Facebook event here.

Polyamory is one form of consensual non-monogamy – having multiple sexual, romantic, or otherwise non-platonic relationships, with the awareness and consent of the people involved. (We’re not referring to it as “ethical” non-monogamy because there are plenty of unethical ways to do polyamory, and plenty of ways to be ethically non-monogamous that are not polyamory.)

At the March salon, we’ll talk about issues like:

Time management. How do you make time for each of your partners, your pod/polycule, *and* yourself

REGISTER EARLY to receive the workbook, written specifically for this workshop by myself and Pedrom Nasiri, on March 1. You can register by emailing me. This workbook will also be available at the event, and will be expanded into a downloadable resource that incorporates the March 4 discussion following the event.

The cost of the workshop is $50, with sliding scale available.

I’ve been involved in Calgary’s polyamorous community for many years, and bring the perspective of a queer, non-binary, chronically ill, neurodivergent, white settler with a long history of depression and anxiety – all of these factors contribute to how I “do” polyamory, and how I do self-care within polyamory. (I’ll be sharing a few of the stories of my Adventures in Polyamory on my Patreon over the next few weeks, if you want the inside scoop on my background when it comes to this part of my identity!)

Pedrom Nasiri, my co-facilitator, is a social and cultural anthropologist. They bring the perspectives of a queer, non-binary, polyamorous, racialized, and neurodivergent Ph.D. student to their study of, and engagement with, non-monogamy, and its intersections with family, intimacy, and care.

Wondering what the self-care salon is all about?

Each month, we’ll meet for tea and snacks and discussion – an opportunity to take a deep dive into a specific self-care topic, with space for your questions and insights.

Each self-care salon will include a short presentation by a community expert – someone who can speak from their own experience about a self-care related topic. “Expertise” in this context is a broad and inclusive word, not limited to folks with letters after their names or professional designations, and recognizing the expertise that we each gain over the course of our lives. If you’re interested in presenting, get in touch!

These workshops are intended to be as accessible as possible. The space is wheelchair accessible (through the back door), with a separate space for folks who are experiencing sensory overwhelm to chill out, and gluten-free and vegan snack options.

The cost for the workshop is $50, with sliding scale available. Nobody will be turned away for financial reasons.

Sustainable and ethical self-care is not possible without intentional and compassionate community care, and the Indigenous communities whose land we live on are often forgotten. These workshops take place on Treaty 7 land, and the traditional territories of the Blackfoot, Siksika, Piikuni, Kainai, Tsuutina, and Stoney Nakoda First Nations, including Chiniki, Bearspaw, and Wesley First Nation. This land is also home to Métis Nation of Alberta, Region 3.

Image description: A stick figure stands, hair on end, surrounded by a field of static electricity. Text reads: “Sometimes, I am a ball of staticky, chaotic, uncomfortable energy. It makes it hard to connect!” A second stick figure stands, with roots growing out of their feet, watery wiggles over their legs, torso, and arms, and leaves growing out of their hands and head. Text reads: “Sometimes, I am a plant (in my mind) and all teh static energy is gone, and I connect to the ground, and feeling myself growing and nurtured.” There is a small Tiffany Sostar logo in the bottom left and a tiffanysostar.com link in the bottom right.

Today’s #stickfiguresunday was inspired by the chat we had this morning in the Bridges and Boundaries: Social Self-Care course. We were talking about how social self-care, particularly the bridge-building side of social self-care (those actions that invite connection, or that reach out from us-as-individuals towards us-as-community-members), requires resources and favourable contexts. Anxiety, depression, inner narratives around rejection, lack of time, energy, or money – these all create barriers to connection and can contribute to our feelings of isolation, loneliness, and helplessness.

One of the barriers that we might run into is the feeling of being “bad” at connection. Incoherent, unfocused, frazzled, no-fun. The metaphor we generated during the discussion was feeling like our entire energy body was staticky – every part of us feeling the way your hair looks when you rub it with a balloon.

We imagined ways to manage this – to ground the staticky energy, or to find the metaphorical dryer sheet we could rub on ourselves to calm down the static. That’s an important step because when we’re staticky like this, not only are we uncomfortable, but we’re also conscious of the risk that we might shock other people if we try to connect. Yikes!!

For this Stick Figure Sunday, I realized that one of my own “dryer sheet” skills is thinking about myself as a plant. Grounded, growing, and full of life and deeply connected roots.

Can you relate to the feeling of being staticked up?

What do you use to help dissipate, calm, or ground that staticky energy?

At the beginning of January, I posted about upcoming projects. At the beginning of February, I posted this on my Patreon! If you’d like to see what I’m up to in a more timely manner, I definitely recommend the Patreon. One of the benefits is you’ll see posts theoretically a week early, but actually more like a week and a half, since I am forever struggling with herding those to-doodles. This version of the post is updated to add details that have developed in the last 12 days. Phew! What a moving target life is.

One reason I’m going to keep up with the review/preview posts through 2018 is because I tend to set unrealistic goals for myself, not attain those unrealistic goals, and then feel like a failure. I would like to start documenting my goals and my work, so that I can bring my goal-setting more into alignment with my actual available time, energy, and financial resources.

This will be particularly important in this upcoming year because my Master of Narrative Therapy and Community Work program starts this month. (Yes!) Update: Today! It starts today! Once I hit publish on this post, I’ll be hopping over to the UofMelbourne site to get started on my readings!

I work with people to help them develop sustainable self-care strategies and to help them make progress on the goals that are important to them. I want to help myself in that way, too. And the first thing I tell almost every client is – start noticing. If a client came to me with my life and asked for help, I would say – Notice what you’re asking of yourself, notice what you’re accomplishing, notice how it feels, notice what choices you’re making to support and care for yourself. See it, name it, make space for it.

So that’s what I’m doing in these monthly posts, and I’m hoping to keep that up throughout this year.

So here’s what I accomplished (and didn’t accomplish) in January, and what’s on tap for February.

– The Caring for Neurodivergent Kids book club has soft-launched. The Facebook group has been created, and the first book has been chosen. We’ll be reading No You Don’t by Sparrow Rose Jones, the author of Unstrange Mind. There is still space available in the book club, so if you’re in Calgary and interested, let me know! Our first meeting will be happening at the end of February. If you’re not in Calgary, or not able to attend, I’ll still be writing up a detailed review of each of the books we read, and those reviews will be posted on my Patreon, and then on the blog. Update: mid-March for the first meeting, so that we have time to read the book, which hasn’t arrived yet.

– The Extroversion and Self-Care/Mental Health resource is progressing slowly. We ran into a few hiccups with scheduling because January was full of migraines and illness for myself and the people I was trying to coordinate with. It’s progressing, though! And there is definitely still opportunity to get involved, if you’re interested. Update: I had an absolutely fantastic interview with someone for this project, and have a refined vision of what kinds of issues to include in the resource. Namely, the expectation placed on extroverts to be perpetually resilient and constantly available.

– The collaboration with my brilliant sibling, Domini Packer, has a name. Well, This Sucks will be a resource to help support that self-care and recovery process for folks following sexual assault – both the survivors and the people supporting them. I’m not 100% ready to reveal the major changes to the plan but trust me when I say… it grew exponentially. It started as a plan for a downloadable resource, similar to other resources I create on specific topics, and over the course of this month, during discussions between Domini and I, and one really fantastic interview with a community member, it grew. And it grew in ways that made my therapist say “wow, that sounds really exciting!” Domini and I are heading out of town for a day of planning, budgeting (yes, it has become a plan that requires a budget), and preliminary-outlining. I’ll have more to share after we get back! Update: Ye gods, is there a lot to share. This will be a whole post.

– The Bad Gender Feels resource is also slowly progressing. Very slowly, but that’s okay.

– The February Self-Care Salon will feature Rein Sastok presenting on self-care for teachers and other child-centric professionals, with the conversation also extending to parents, stepparents, and other carers. To be honest, I have been struggling with the Self-Care Salons – attendance is low, and I have yet to cover the costs of renting the space and paying the guest speakers. Update: This was cancelled. We are still going to generate a resource, to be completed in May, with companion modules for professionals and parents/stepparents/non-parent carers.

– Bridges and Boundaries: Social Self-Care has launched, and I am really happy with how it’s going! I also had the realization, as I finalized the Week Two content earlier this week, that once I’ve run each of the four core courses this year, I will have 200+ pages of work, which could form the backbone of a book on self-care. That’s not something I’m committing to, it’s just sort of floating around in my head as a thing that could happen.

– Speaking of books… the 100 Love Letters book is… still going to be happening. I did make some progress on it this month – I won that package of coaching sessions for writers back in December and I had the first coaching call on January 18. I’ll be slowly (emphasis on slowly, and on low pressure) moving ahead with this project.

– I haven’t made a ton of progress on pulling my work off of Facebook and onto the blog more consistently. For some reason, that extra step just feels overwhelming. I am considering figuring out some kind of content management system that will let me cross-post to multiple platforms at once. But I’m not 100% sure when I’m going to do that so… we’ll see. But I do know that many of my favourite people have fled the mess that is the books of face, and I want to stay connected. It’s simmering in the back of my head. I’ll figure something out, but I’m not sure what or when.

– I started working on the disenfranchised grief project(s). There is a set of grief-related projects that are coming up. One is a resource on sibling loss, and I’m collaborating with a new friend, who has lost a sibling, on that project. We’ve started pulling notes and resources together. Another is on the loss of someone who is addicted or street-involved, because that grief is so complicated by our victim-blaming culture. And the third is a project on anticipatory grief. This is all in the preliminary stages, but I’m including it here because it’s been floating to the front of my mind pretty regularly this month and I’ve spent time and energy on it.

– I’ve kept up with the Tender Year posts, and am posting those on my personal facebook page (almost) every day! I’m really proud of this project, and of the fact the three of us collaborating on the project have stuck with it for 120+ days so far. I don’t know what will come of this work, but I am excited about it either way.

And in terms of new goals and projects for February.

– That Master program thing. I’ll be doing a lot of reading in February, but I won’t have my first written assignment due until early March. Would patrons be interested in hearing about what I’m reading and learning? I will definitely have to slow down on the output of my other writing (look, aiming for sustainability!) and this would be one way to keep up my end of the Patreon deal. (I will still be producing the Possibilities resource and the Patreon reward posts each month, and I’ll still be working on the other resources, just a bit more slowly.)

– I’m going to take one day off every week this month. That’s not an “output” goal but I think it is important to take note of. I had hoped to do that in January and it just fell apart after the … honestly, I only managed it one week in the whole month. So, I’m putting it here as part of the accountability part of this project. Update: Lol. BUT! I am trying. This week, for sure. For sure!

– I have two outstanding Patreon reward posts for January, and one Patreon supporter whose birthday is in February who has asked me to do something super terrifying rather than write them a reward post. So, I’ll be catching up on those two posts and also considering the absolutely mortifying idea of setting up some kind of crowdfunding for the financial gap I’m looking at over the course of this year. I will, even if I don’t set up any crowdfunding, definitely be writing about the process. I think that money shame is a topic I’ll be tackling in February. (And by “tackling” I mean “sidling up to slantwise and with much trepidation.”)

– I’ll be hosting another Smutty Story Circle facilitated writing group for the Calgary Centre for Sex Positive Culture on March 2. (I know that’s not February, but I’ll be doing all the prep in February.)

– I’ll be meeting with a professional grant writer this month to talk about finding some funding for the (suddenly enormous) collaboration with my sister, and possibly for some of my other work. Update: Wednesday! Wish me luck.

And, of course, continuing to post about self-care, including Stick Figure Sunday and Woodland Wednesday, on the Facebook page.

If you want to be involved in any of the collaborative projects, let me know! And if you have any feedback on the projects, or other projects that you’d like to see added to the slow-moving list, let me know that, too!

I really could not be putting as much energy, time, and effort into creating the self-care resources without the support of my Patreon patrons. When I get discouraged, and feel like my work isn’t making a difference because the world is just so sharp these days, the fact that people consider my work worth supporting keeps me going.

Two more updates: First, I lost one of my paying jobs. This is a big deal, because I was already facing some challenges on that front. I’m applying for more editing work, and renewing my focus on finding ways to get the word out about the coaching business. And second, I am launching an exciting new tarot project. It’ll be separate from this work, so if you’re interested, send me a message and I’ll connect you with that!

This is a Patreon reward post for Kate, and was available to patrons last week. Patreon supporters at the $10/month level get a self-care post on the topic of their choice during their birthday month. These supporters make my work possible! Especially as I head into my Master of Narrative Therapy and Community Work program, my patrons ensure that I can keep producing resources and self-care content. (And wow, there are some really great resources in production! Check back tomorrow for a post about that!)

Kate and I have known each other for a few years, and got to know each other while we were both going through some challenging times (though we didn’t actually meet in person until quite a bit later, and still aren’t able to spend as much time together as either of us might like!)

Kate has been one of my most outspoken supporters, and I appreciate how she is always willing to leap in with an offer of help or a suggested solution.

Her birthday is in January, and her topic is, “maintaining intimate relationships and partnerships with a chronic illness or chronic pain.”

I struggled with writing this post because I am experiencing my own spoon shortage. I’m in the middle of a depressive episode, have been sick for the last two months, and my fibromyalgia pain has been spiking. All of these spoon-hoarding gremlins are impacting my own relationships, challenging my sense of who I am and how I navigate the world, and putting gloom-coloured glasses on my view of the future. When I write about self-care for folks who are struggling, it’s easier when I can write about a struggle I am not currently experiencing. It’s easier if I can yell back into the labyrinth from the safety of the outside. Easier, but not always better. It is a myth that the best insights come from people who have “figured it all out” – I believe the opposite is often true. When we are in the thick of it is when we have the most relevant and meaningful insider information. Our struggle is not a barrier to our ability to help each other – it is the fuel that allows us to help each other. This is one of the key principles of narrative therapy, and as much as it challenges me, I am trying to bring it into my own life. Can I write something worthwhile from the heart of the struggle? Yes. Well, I think so. Let’s find out.

What Kate asked about was maintaining intimate relationships while navigating chronic illness or pain. In relationships where one person experiences chronic issues and another doesn’t, those issues can create a significant disparity in ability and access to internal resources. (And in relationships where multiple people are experiencing chronic issues, the pressure resulting from reduced access to resources can grow exponentially.)

Being in the position of having (or perceiving that we have) less to offer often triggers shame, fear, and stress. In my own relationships, I worry that I’m not worth it, that my partners will grow tired of me. I worry that I’m “too much.” I have heard the same worry from my clients.

This anxiety is so natural, and so understandable. Our society does not have readily accessible narratives that include robust “economies of care.” Our most common narrative has to do with “pulling our own weight” in a relationship, and our definitions of balanced relationships rely so heavily on ideas of equality rather than justice. Split the bills 50/50. Take turns washing the dishes. You cook, I’ll clean. My turn/your turn for the laundry, the diapers, the groceries.

And it becomes more complicated when we consider the intangible labour of emotional support and caregiving, which is disproportionately assumed to be the role of women in relationships with men, and, since women are also often the ones experiencing chronic pain or illness, this can compound into a messy and unjust situation pretty quickly. (To back up these claims, check out the links at the end of this post.)

Thankfully, both of these problems – the tit-for-tat approach, and the unjust division of emotional labour – are being challenged by writers, activists, and communities on the margins.

In Three Thoughts on Emotional Labour, Clementine Morrigan writes, “We can name, acknowledge, honour, perform, and yes, accept emotional labour, instead of simply backing away from it because we don’t want to be exploitative.”

This is so challenging for so many of us, because we do not want to exploit our friends, our partners, our communities. When we experience chronic illness or pain, the fear that we might slide into exploitation and “being a burden” becomes amplified. Morrigan suggests that we can ask three guiding questions about the emotional labour we are offering or accepting – Is it consensual? Is it valued? Is it reciprocated?

If we can answer yes to each – if we are discussing what we need and what we can offer, if we are valuing what we are offered and if our own offerings are valued, and if there is reciprocity – fantastic!

But what does reciprocity look like in situations where there is a disparity in access to resources?

Morrigan suggests that:

“It is important to acknowledge that some of us need more care than others. Some of us, due to trauma, disability, mental health stuff, poverty, or other reasons, may not be in a position to provide as much emotional labour as we need to receive. We may go through periods where are able to provide more emotional labour or we may always need more care than we are able to give. We may be able to reciprocate care in some ways and not others. This is totally okay. We need rich networks of emotional care, so that all of us can get the care we need without being depleted. We need communities that value and perform emotional labour—communities that come through for each other. Reciprocity is a commitment to building communities where all of us are cared for and no one is left behind; it is not a one for one exchange.”

It is not a one for one exchange.

This is so critical.

And it’s so hard to make space for this. It’s hard to see our worthiness and the value we bring to a relationship when what we offer has shifted from what we were able to offer before the chronic issue grew up within us and between us.

Not only that, but it’s often hard for our partners to recognize what we’re bringing to the relationship. Not because they don’t love and appreciate and support us, but because they are also caught within the web of accessible narratives and ableist norms.

In order to answer “yes” to Morrigan’s “is it valued?” question, we need to be able to look clearly at the work our partners, friends, and families are doing for us and acknowledge that work. And we need to be able to look clearly at our own work and speak openly about it, so that it can be valued. Neither side of this is easy.

Becoming aware of the skills and insider knowledges that we develop as we live our new pain-, disability-, or illness-enhanced lives can help with recognizing, articulating, and allowing people to value our new contributions.

“Sick and disabled folks have many superpowers: one of them is that we often have highly developed skills around care. Many of us have received shitty, condescending, charity-based care or abusive or coercive care—whether it’s from medical staff or our friends and families. We’re also offered unsolicited medical advice every day of our lives, mostly coming from a place of discomfort with disability and wanting to “fix” us.

All of this has made us very sophisticated at negotiating care, including our understanding that both offering and receiving it is a choice. The idea of consent in care is a radical notion stemming from disabled community wisdom. Ableism mandates that disabled people are supposed to gratefully accept any care offered to “fix” us. It’s mind blowing for many people to run into the common concept in many sick and disabled communities, that disabled people get to decide for ourselves the kind of care we want and need, and say no to the rest. This choicefulness has juicy implications for everyone, including the abled.”

I love her wording here. The juicy implications of choicefulness! Imagine the possibilities of this.

And yet, even as I revel in this juicy and nourishing framework, I remember my own deep and ongoing struggle with the concept of pain, illness, and disability as invitation, as superpower, as self. This radical reorganization of labour within relationships does not come easily, and one of the reasons it’s so challenging is because our concepts of fairness are so influenced by one to one exchanges.

Piepzna-Samarasinha addresses this fear later in the essay, reminding us that, “Disabled people often run into the idea that we can never offer care, just receive it. However, we often talk about the idea that we can still offer care from what our bodies can do. If my disabled body can’t lift yours onto the toilet, it doesn’t mean I can’t care for you—it means I contribute from what my particular body can do. Maybe instead of doing physical care, I can research a medical provider, buy groceries for you, or listen to you vent when one of your dates was ableist.”

We forget that there is still care, still reciprocity available within our relationships even when our ability to perform the tasks we used to, or the tasks we wish we could, has shifted.

Learning how to navigate this shift is challenging.

Searching for resources to share in this post, I was discouraged by the sheer volume of academic research performed by normatively abled “experts” on the outcomes for relationships that include a disabled partner. Once again, the centre scrutinizing the margins. It creates such a disempowering framework.

I was also dismayed by the fact that “should I date a disabled person” was one of the suggested related searches. Gross! GROSS!!!!

These are the narratives, and the social framework, within which we try to navigate our relationships as pain/illness/disability-enhanced individuals.

We need more robust, inclusive, intersectional, and hopeful resources. Not hopeful in the “look on the bright side” gaslighting-via-silver-lining sense. Hopeful in the sense of possibility-generating, hope that, in Sara Ahmed’s words, “animates a struggle.” Hope that reminds us that there are narratives possible outside of the ableist norm, and that we can write those love stories within our own lives.

The parts of ourselves that do not fit tidily into the ableist ideal show up in our relationships in many ways. In order to write those inclusive love stories of any kind – platonic, romantic, familial, or parental – we need to recognize and learn to navigate all of it. Financial, social, emotional, physical, mental – very aspect of ourselves that requires tending and care.

Chronic illness/pain/disability impacts our financial lives – we are often less able to work within normative capitalist models. The 8-5 grind doesn’t work if you can’t manage a desk job for 9 hours a day, and many other jobs are also out of reach. This adds pressure to our partners and social supports. Money is a huge source of shame and fear for many of us, so learning how to talk about requiring financial support, how to shift the balance of contribution in a household – overwhelming! Be gentle with yourselves in these conversations.

I find this particularly challenging. More than almost any other way in which my chronic issues impact my relationships, the financial instability that has been introduced as a result of my no longer being able to work a full-time job feels humiliating and shameful. I am working hard to carve out a living for myself, to build my business in sustainable and anti-ableist ways, to do what has to be done to pay my share of the bills. But my partners still take up more than what feels “fair” in the financial realm, and it’s hard. For me, engaging with writers, activists, and advocates who are challenging capitalism and neoliberalism has been helpful. Recognizing that there are other economic models available has opened up some space for me to still see myself as a contributing member of my partnerships and society.

Chronic illness/pain/disability also impacts our social lives – getting out to see friends can become more challenging. Our partners can end up taking on more social caring work for us, being the ones we talk to when we aren’t getting out (or when we don’t feel safe to talk about our struggle with others).

The aggressive individualism of our current anglo-european culture means that we are often isolated, and this can be so discouraging. Again, I struggle with this personally and I don’t have easy answers.

And searching for resources on parenting with chronic pain, illness, or disability is similarly challenging and disheartening. Parenting with any kind of divergence from the ideal is difficult. The weight of judgement, assumption, erasure, hostility, and isolation is so real. Although more supportive and inclusive blog posts, research papers, and articles are being written, the perception of a weirdly-abled parent is still one of lack, inability, and pity.

We often want to provide everything our children needs, without outside help. That’s the expected ideal. The nuclear family is still the celebrated norm, and the ideal of a normatively abled, neurotypical, stay-at-home, biological parent is still the target to meet. We may recognize that “it takes a village” but we resist the idea that part of what that village offers may be physically chasing after the toddler, lifting the baby, doing homework with the teen, helping with the rent. Just like we need to expand our conception of emotional labour and economies of care within relationships, we need that same expansiveness and redefinition within our parenting relationships and roles.

Which is easy to say, and incredibly hard to do.

At Disability and Representation, Rachel Cohen-Rottenberg writes, “What so many able-bodied feminists don’t get is how profound an experience disability is. I’m not just talking about a profound physical experience. I’m talking about a profound social and political experience. I venture out and I feel like I’m in a separate world, divided from “normal” people by a thin but unmistakeable membrane. In my very friendly and diverse city, I look out and see people of different races and ethnicities walking together on the sidewalk, or shopping, or having lunch. But when I see disabled people, they are usually walking or rolling alone. And if they’re not alone, they’re with a support person or a family member. I rarely see wheelchair users chatting it up with people who walk on two legs. I rarely see cognitively or intellectually disabled people integrated into social settings with nondisabled people. I’m painfully aware of how many people are fine with me as long as I can keep up with their able-bodied standards, and much less fine with me when I actually need something.

So that fear of embracing a new normal, subverting the neoliberal individualist norm, creating new economies of care and radically altering our relationships to be just rather than equal… this doesn’t happen in a vacuum. We aren’t just subverting norms and creating new relationship methods – we are doing so, as parents, under the scrutiny of an ableist and highly punitive culture. We are conscious of the fact that our subversion of norms, which may be possible within adult relationships, may make our parenting relationships more precarious, more tenuous.

Access to external help is readily available to the professional upper class – nannies are a completely acceptable form of external help, and parents are not judged for needing a nanny when that need is created by long working hours. Needing help in order to be more productive? Sure thing. (You’ll still face judgement, of course. Can any parent do it “right,” really? Nope.)

But needing help because of pain, illness, or disability?

Yikes.

That is much less socially sanctioned, and there are far fewer narratives available that leave space for that choice to be aligned with a “good parent” identity.

And yet, many of us do parent while in pain, while ill, while disabled. And we are good parents. Just like we have valuable superpowers of caring that can be brought into our adult relationships, we have the same superpowers of caring to bring into our parenting roles. What we do may look different than the pop culture ideal. How we do it, when we do it, who helps us with it – that might all look different. And that’s scary. But the value it brings to our kids is immeasurable.

One of the invitations that chronic illness, pain, and disability extends is that it pulls the curtain back on how harmful the neoliberal ideology of rugged individualism really is, and asks, “is there another way?”

I’m not great at saying “yes” to that invitation, but I’m getting better at recognizing it when it shows up. I don’t need to have all the answers, because I have a community around me that is brilliant and incredibly generous.

So, when I was struggling with this post, I asked my best friend and one of my partners to help me.

H.P. Longstocking has been dealing with the long-term effects of two significant concussions, and in a moment of discouragement at my own inability to write this post, I asked if she could help me get started. What she sent touched on so much of what I wanted to write about, so eloquently, and I’m ending this post with her incredibly valuable contribution. She is a parent, a scholar, and an integral part of the social net that keeps me going. I think there’s hope in how she has responded to this.

She writes:

While I am no stranger to depression or anxiety, I had never experienced a chronic debilitating illness and I found that my self-care habits and techniques were no longer usually helpful or even always possible. Last summer I had several concussions. Because I had sustained so many as a child, these two accidents completely changed my life. Most of the summer I was not safe to drive or even walk as my second concussion happened when I tried to walk out of my bedroom and due to the concussion symptoms, I cracked my head into a wall. I could not look at screens, read, handle light or loud noises, and was told to stop having sex. All of my self-care habits were taken away.

I have always been an active person. Running and cycling have been my times of meditation and recalibration. Dancing brings me joy. Physical activity has been an integral part of my self-care since I was a small child. To have days, weeks, and months where walking short distances is the most physical activity I can safely manage, and some days not even that, has had a detrimental impact on my body and my emotional well-being.

I used to love to read. I devoured books and articles. I had just started my Masters and was supposed to be immersing myself in the scientific literature. I could not do any of that. I still struggle. Reading was my escape, my lifeline, my lifeblood, and I hoped, my livelihood. Now it causes me pain.

I was not prepared for the constant, chronic pain. Previously, I had headaches so rarely, I did not recognize them the few times a year I would experience one. Now, I have a hard time recognizing it because I am never without one. I find that I have my face screwed up in pain after someone reacts to me as if I am scowling at them. My coping mechanisms for the pain are to hyperfocus on something so I am unaware of most of the world around me. Unfortunately, this is usually my phone which in the long term makes it worse, but also as it gets worse, I have less self-control and ability to stop myself.

All of this has impacted my relationships. Without the ability to drive, I am often limited in who I can see and where I can go. Even without that, I am easily tired in social settings and my words begin to slur in mental exhaustion. I cannot handle loud spaces for very long, or if I do, I pay for it with days of recovery. I often feel isolated, alone, and incapable of taking care of myself, let alone being the partner, parent, and student I aspire to be.

But, I have adapted. Instead of reading, I listen to audiobooks. Instead of digesting dense theory or the latest studies, I listen to light narratives and fiction that has a plot so predicable that I can fall asleep and not miss much. I go for short walks instead of long bike rides.

My relationships have also changed.

It is hard to feel like you are not carrying your weight, especially in this neoliberal culture where people are valued according to how much productive and profitable output they can do. It is hard to be a partner with someone when you are more dependent and roommate than lover. It is hard not be able to see people, leave the house, focus on what someone is saying, or do what they are doing. It is so isolating and would be so much more so with poverty added as well. It hurts to see your kids do an impression of you which is just sleeping.

My friendships have changed. I am slowly learning to ask for help. To say no. To cancel plans last minute because it is not safe that day for me to go out. I cancel plans so often now that I am scared to make them. Much of my socialization now is online and sporadic. There is a price to pay for too much screen time. I am spending more time with people I do not have to hide my pain from. I do not have the resources to put up with mind games and people who suck energy. I have a few friends that make safe spaces for me to come and just nap around them so I won’t feel alone. My life is rich, even though my world and abilities have shrunk.

Self-care looks entirely different to me now. Instead of the sun on my face and the pounding of my feet on running paths, I sip tea wearing sunglasses. Instead of pushing through discomfort, I am learning to listen to it so that I do not make things worse. Instead of losing myself in the written word, I find comfort in story, sound and other sensory delights. Some of the people I spend time with have changed, and the ways I spend time with people have also. I do not know which symptoms will resolve and which I will have for the rest of my life, but while I grieve for friendships and opportunities lost, I am also grateful for the capacity to change and adapt, and trust that relationships worth holding onto can withstand the changes as well.

Further reading on emotional labour:

Wondering about women’s differential experiences of pain? Check out the trans-inclusive Popaganda podcast on Women and Pain.

And we can’t discuss differential expectations of emotional labour without acknowledging misogynoir and the demands on Black women to be caregivers for their own communities and the white communities around them. Misogynoir and Black Women’s Unpaid Emotional Labour touches on this issue.

And then, tie it back to chronic illness, chronic pain, disability. Disability and Emotional Labour talks about these issues, and although it’s an article related specifically to activism, it comes into our lives and relationships in many ways.